Hopefully just a quick update but my Primary dr., messaged this morning (Thurs) that she had gotten ahold of and talked to my Cardiologist. (I am so grateful I was given her name 5 or 6yrs ago; she's persistent and never seems to give up no matter how much is going on with my case). I am grateful despite her having known little to nothing about my MPS she in fact did learn and will ask if she isn't sure about something. I so appreciate she's never afraid to reach out to other of my Providers and always willing to learn or figure something out!
Dr.Simpson and my Cardiologist spoke, she shared with him what's been going on and he seems to agree with her that I am dealing with fluid issues and that going back up on the Lasix (gets fluid off) was the right decision.
He per Dr.Simpson feels due to my mitral valve and the issues we're having is due to fluid sensitivity due to the mitral valve problems (ya know, the 2nd valve we replaced approx. 2.5yrs ago. No one is quite sure why my body has done the quirky things it's done with this valve or in general why my heart issues are so significant for an MPS I Pt.)
Initially Dr.Simpson, Dr.Earing per her message wondered if it had some to do with increased fluid in the Humira I get every 2wks but that is an injection not an infusion so is very little additional fluid. This will stay the same and nothing will change with the humira injection or study I am in thankfully. There's back and forth question if the humira is causing these issues but so far team has let me stay on it, I think b/c I have had good changes/affects from it even if there is some question of possible cardiac involvement/side effect (I don't think anyone is entirely sure yet if the Humira is causing these changes).
The weekly enzyme replacement infusion I get is also 1/2-to1/4 the total volume other MPS I Pts get so that's not the issue or cause of the fluid overload.. My body as Dr.Bragg (former Neurosurgeon) used to say just doesn't do normal - my body reads the 1st line of the manual then makes it's own rules (shrugs).
So for now we're just staying on the increased Lasix dose, Dr.Earing was apparently reassured I'd just seen Dr.Simpson but Dr.Simpson wanted me to see Dr.Earing or 1 of his colleagues before the hand surgery on the 10th if possible. I fwd'd that to Jane, his Nurse and she was able to make an appt the 9th so we'll go from there.
Pre-op for the Hand surgery is with 1 of the NPs in Dr.Simpson's clinic which will or could add an extra layer of confusion but I also know Dr.Simpson is pretty cautious and likely will make sure things are squared away and what's needed is in place.
I've let my Endocrine dr know so they'll fwd their pre/post surgery cortisol mngmt plan to my Hand surgeon and my PCP prior to surgery.
Pulmonary:
Pulmonary, yesterday (Weds) Dr.Biller wanted to see what Dr.Earing thought 1st but thought we should probably re-do the PFTs (breathing tests) and maybe a CT Scan (Dr.Simpson wasn't sure we'd need the CT so I'm not sure). Per Dr.Biller's request I was to let her know when Dr.Simpson/Dr.Earing spoke and she'll schedule the other stuff I guess.
Hopefully it all works out ok and comes together! Otherwise I travel to San Diego in a couple wks for the International MPS Conf., I am hoping I am feeling a bit better but wouldn't be the 1st time I guess I traveled when I wasn't feeling great if not. After that I go to MN mid-August and later in Sept to L.A to finish out the Humira study.
Will update when I know something new.
Pray for good answers, meds to work and this to resolve if possible!
Take care, God bless,
Erica
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